1. < Hypertrophic Cardiomyopathy (HCM)

Freaking out a bit - Upcoming surgery!

Posted by badmac @badmac, May 29, 2019

I was officially diagnosed with HCM about 3 years ago, however i have been feeling the symptoms since childhood. I always felt something was wrong, and been to the cardiologist many times and they didn't find anything until about 8 years ago, a very pronounced murmur appeared and they were looking into what was causing it. They didn't diagnose me then, however they wanted to keep an eye on the murmur, so every year i get an Echo. 3 years ago they found the HCM, and this year it is now considered obstructed, which i believe is HOCM? My cardiologist said i will need a myectomy. This next monday i am headed to the cath lab for them to take a closer look. Not sure what happens next. I'm freaking out. Been reading other posts, trying to learn more about the surgery and what to expect. Sounds like this is an open heart procedure? I think that scares me most. I am 51 years old. Over the last couple of years i have really slowed down, and get fatigued quickly, chest pain, strange heart beats and sensations. And over the last few years i have been dealing with severe anxieties because of this. I am on a few meds for the HCM as well as other meds for diabetes. Is this an open heart procedure? Thankfully i live in the phoenix area, so there is a mayo clinic here. A few years ago, i never heard of HCM. Up until a week ago, i didn't know they could surgically treat it. there seems to be lots of peoples stories here with some great information. Some of it is scary and most seems to be positive. Not sure why I am posting, but when i describe this to my family, they don't seem to understand this is kinda serious. I guess i just needed to relate to someone who understand this.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 1, 2020
In reply to @ahaugland "Thank you so much for taking the time to ease my stress! I posted my first..." + (show)
@ahaugland

Thank you so much for taking the time to ease my stress! I posted my first comments and have stayed off just because I was afraid of what I might hear from those of you who have gone through this experience. We are definitely a club I hadn't planned to join! I am not waiting for a battle with insurance! Even though I have very good HMO insurance, it appears Mayo is not in my network even though it is close to same distance as the ONE clinic in the state that treats this! UGH! I have no idea if I will be forced to jump hoops to be able to go to Mayo. I am not the most patient person when it comes to someone else making decisions about my life! Again, thank you for your kindness. I look forward to hearing and reading more.

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@ahaugland, I might suggest that you call Mayo Clinic directly. They may be able to help with getting your insurances accepted. If never hurts to ask and the phone call doesn't cost anything, right?

Here are the contact numbers http://mayocl.in/1mtmR63

REPLY
jkrjourney | @jkrjourney | Oct 18, 2021

Hello ~ I'm Jeanne. I was diagnosed with HCM in July, had my appointments and met with Dr. Ommen on 10/4, and I have surgery scheduled with Dr. Schaff on 11/3. My head is maybe spinning a bit. In reading this thread, I noticed the deep exhale of the breath I didn't know I was holding. Thank you. I am relatively sure that I'll hit the place where I want to change my mind and go home, but I'm not there now; I'm not so much afraid of the surgery (yet), but as I read some of the blogs on Connect, I became really afraid that I'm not ready for the convalescence. My husband and 2 adult daughters will come for the surgery; we have an Airbnb rented for 2 days before & 7 days after the surgery, with the ability to leave early with no cost/penalty; one of the girls will fly home to DC, and the rest of us will drive the 500ish miles home to NE Indiana, with me in the back seat.
I'm a 72 year old woman; 3 years ago I was walking 10 miles a day; now, I'm proud when I can manage a mile, though I still go out to give it a try every day. I look forward to having my life again, but have hit panic that I should be better prepared before I take this on. I'll go back and read your posts again - perhaps I'll find that deep sigh of tension release again.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2021
In reply to @jkrjourney "Hello ~ I'm Jeanne. I was diagnosed with HCM in July, had my appointments and met..." + (show)
@jkrjourney

Hello ~ I'm Jeanne. I was diagnosed with HCM in July, had my appointments and met with Dr. Ommen on 10/4, and I have surgery scheduled with Dr. Schaff on 11/3. My head is maybe spinning a bit. In reading this thread, I noticed the deep exhale of the breath I didn't know I was holding. Thank you. I am relatively sure that I'll hit the place where I want to change my mind and go home, but I'm not there now; I'm not so much afraid of the surgery (yet), but as I read some of the blogs on Connect, I became really afraid that I'm not ready for the convalescence. My husband and 2 adult daughters will come for the surgery; we have an Airbnb rented for 2 days before & 7 days after the surgery, with the ability to leave early with no cost/penalty; one of the girls will fly home to DC, and the rest of us will drive the 500ish miles home to NE Indiana, with me in the back seat.
I'm a 72 year old woman; 3 years ago I was walking 10 miles a day; now, I'm proud when I can manage a mile, though I still go out to give it a try every day. I look forward to having my life again, but have hit panic that I should be better prepared before I take this on. I'll go back and read your posts again - perhaps I'll find that deep sigh of tension release again.

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Hi Jeanne, I see you connected with @karukgirl and others in another discussion. I think you might also be interested in reading this discussion started by @ronpetrovich

- HCM CARE tips - What do you wish you had known after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/

I think tips shared by fellow members will help you prepare for the post-surgery recovery. It sounds like you’ve done a lot of good homework to prepare, you have your family team assembled and have many things in place including keeping up your physical health. Take a minute to give yourself a pat on the back. It seems to me like, as the day approaches, the thoughts start whirling in your head and you make yourself nervous as you hear the loop play over and over again in your head. When this happens to me, I find it helpful to write things down. I make lists (all the time). It helps me to remind myself that I have taken care of things. Might that help?

REPLY
1 reply
jkrjourney | @jkrjourney | Oct 25, 2021
In reply to @colleenyoung "Hi Jeanne, I see you connected with @karukgirl and others in another discussion. I think you..." + (show)
@colleenyoung

Hi Jeanne, I see you connected with @karukgirl and others in another discussion. I think you might also be interested in reading this discussion started by @ronpetrovich

- HCM CARE tips - What do you wish you had known after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/

I think tips shared by fellow members will help you prepare for the post-surgery recovery. It sounds like you’ve done a lot of good homework to prepare, you have your family team assembled and have many things in place including keeping up your physical health. Take a minute to give yourself a pat on the back. It seems to me like, as the day approaches, the thoughts start whirling in your head and you make yourself nervous as you hear the loop play over and over again in your head. When this happens to me, I find it helpful to write things down. I make lists (all the time). It helps me to remind myself that I have taken care of things. Might that help?

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Thanks, Colleen ~ I can't imagine managing all this without my master list. And yes, crossing tings off is so satisfying - I'm disappointed when I think of a thing and take care of it without having added it to the list so that I can cross it off!
We'll be leaving on Thursday to make it to pre-surgery appointments, so the worry about what I need, what I don't know, what I should know, what I should be bringing, etc., etc., etc. will be moot shortly. I've got some really good guided imagery audio files for healing from surgery, and related topics. Those are what I'll be focused on until, and after, surgery on the 3d.

REPLY
lvon | @lvon | Oct 26, 2021

Well this is a condition that has been passed to you from generations. I would suggest your family get on board ,because they also may have been gifted this disorder. If you are having a procedure done at Rochester Mayo you will be in the best hands. Dr Barry Marron is the father genius behind this resurch, who I had the privilage of a consult with and who at the time was linked with the Minneapolis Heart Institute. To con Claude my story, Dr Marron said if he needed the procedure done on himself he would in fact choose the Mayo in Rochester. Don't blame your family for not understanding, but they need to get checked them selves. You will be in good hands. HCM gal her self!

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